Slow and Steady

 I need to start with a huge THANK YOU to my Busy Moms Bible Study ( and Gail and Lisa)who have kept us fed since my surgery! Since standing for any length of time is difficult it was so helpful to not have to worry about cooking.  Thank you to my prayer partners for keeping me in good spirits and not letting me get in a rut. And to Mimi and PopPop for driving Mad around when Bruce couldn't get away from work. This has definitely been a trying few weeks for me as I am fiercely independent! Not being able to get where I want when I want has been a challenge for sure. 

As for my recovery...I am improving, but it is slower than I would like. The good news is that I am getting around a little more. I am pretty sore by the end of the day, but it is manageable. I am still trying not to overdue it. I go back to the surgeon on May 11th and we will discuss therapy at that point. 

As for the kids there have been some ups and downs. Alex had an appointment with his nephrologist and had some labs that have continued to get worse so we are adjusting one of his meds. He is also having some significant colitis that is not uncommon when you have your colon removed. We are keeping a close eye on him. Maddy had a follow-up with her neurologist and while we have had some improvement, she continues to have migraines several times a week. We are doubling a medication to try and get better results. She is also having more trouble with her knees lately, but there isn't much we can do to help that. The most concerning at this point is she has lost a pretty considerable amount of weight. And with that she is losing strength which is hard because she is weak at baseline. It is making riding hard for her. It breaks my heart because she works SO hard, but when you don't have strength it is hard to make a 1500 pound animal do what you want! We are currently increasing her formula to try and get her going the right direction. 

I don't have a lot of pictures because I have been mostly stuck home or sitting in a chair which is not a great way to get pictures! However, we did a few fun events. Last Saturday we attended the Victory Shootout and on Tuesday my bible study painted a Turquoise Table for Victory. (If you haven't read The Turquoise Table, you should!)

Alex shooting Clays

Maddy and Nichole (the creator of the Moo Crew)

Tammi with her girls, Mad and Emerson

Cruising in the Golf Cart

Tammi has made such a difference in Mad's life and I am so grateful for her!

Our completed Turquoise Table

Meeting Freddie!

I am so grateful to everyone who has helped us with support and prayers. Please pray for the kids health and my continued recovery.

Ali

One week Post-op

 I wanted to get out an update as I had my one week follow-up with my surgeon today.  It was a bit of a mixed bag, but definitely more good news than bad.  He started by filling me in on what he found during surgery (I didn't get to speak to him after as I was still asleep). 

As he started the surgery he assessed the entire knee. Luckily the meniscus and all ligaments looked perfect (as we expected). Almost all areas of the knee looked great until he got to the patellofemoral area. When he reached this area he found quite a bit of damage. It was Grade 4 chondromalacia which means that there is complete loss of cartilage with exposed subchondral bone. No wonder I was having so much pain! He cleaned it up so hopefully that will help. But he realized that my knee cap was sitting at a big tilt and if he did not do the lateral release and try to fix the positioning we would be back in the same position in a short matter of time. So he made the decision to do the release knowing it was going to mean a longer, harder recovery, but potentially better long term results. He was able to get the knee cap in a "better" position, but without breaking bones and cutting tendons and using plates and screws there is no way to completely fix it. 

As for today, he was really pleased with how well I am doing. Most people at this point are still not really weight bearing. I am able to walk short distances and get myself around. The swelling is MUCH better than a few days ago although there is still swelling and bruising. While he didn't give me a long list of restrictions he needs me to pay attention to my body and not overdo it as I am likely to do. He is also concerned I could develop blood clots.  He wants me to still be taking it easy and icing and elevating as much as possible to help the pain and swelling. He gave me two exercises to do while I am icing. I am allowed to leave my knee unwrapped when I am sitting around at home, but need to keep it wrapped for walking. They removed the stitches and replaced them with steri strips that need to stay on for two more weeks. I am still not allowed to do any exercise other than walking short distances and still no driving until my follow-up in 3 weeks! At that time we will also discuss starting therapy.

I did get out yesterday for the first time and spent some time at the barn which was exactly what I needed as it is hard for me to be so isolated in the house! Last night my knee was killing me, but I felt so joyful and peaceful. It was exactly what I needed! 

A HUGE thank you to my Busy Mom's Bible Study for keeping us fed this week, To my prayer partners for keeping me on my butt and distracted and sane (well as sane as I usually am) and to Mimi and PopPop for helping with Moo and helping with driving. It truly does take a village and I am so very grateful for mine over the past week.

I appreciate every one who has prayed for me. I ask that you continue to pray for my recovery and healing. 

Ali

Surgery Update

 I wanted to get out an update on my knee surgery today. But first I need to back up to my pre-op on Monday. 

When I met with the surgeon on Monday he likes to go back through the images and make sure we are on the Same page going into surgery. The plan we originally had was to “just do a cartilage clean up” because it was the least invasive and had the quickest recovery. We were hopeful that that would eliminate my daily pain, but we knew it wouldn’t really fix the problem. As Dr. Hurt looked at the images he pointed out that there are sections where I have no cartilage and am literally bone on bone to the point that you could see bone bruising in the images. So we started talking through all options again. You can’t ‘regrow” cartilage, bu the only way to help was to try and fix the tracking of the knee in hopes of stopping further damage. He was amazing at understanding my concerns because of our family situation. We decided that I would talk to Bruce and Mimi and let him know a decision this morning.

After talking to the family and some of my closest friends. We all agreed there wasn’t much choice. If I don’t deal with this now, it will lead to bigger issues in a short period and more surgery would be needed.I did not sleep great last night and  I spent a lot of the night praying. Besides asking for peace for me and the kids, my main prayer was that it would be very clear to Dr. Hurt what needed to be done. When I saw Dr. Hurt in pre-op, he was actually hesitant to do the bigger surgery, because of our circumstances. I told him I trusted him to make the nest decision once he could get in there and see more clearly.

I was very calm all morning and did great with anesthesia. Dr. Hurt did do the lateral release, but I did not see him after surgery as I was still asleep. (Still no visitors so I was alone) At my follow up next week I will get a chance to ask him. Unfortunately, this entails a MUCH harder recovery. I am non-weight baring until I see him. I have to keep my knee elevated and iced around the clock for a minimum of 48 hours. Them I need to us pain and swelling as a guide. Both of which are expected to be more intense. I do not know when I will be able to drive which remains my biggest concern.

I have had a pretty good day, however the novocaine is starting to wear off and my pain has increased some over the past few hours. MY knee is already REALLY swollen. I know it will get worse over the next few days.

Some of the jagged cartilage that needed to be cleaned up

Get Well card from Maddy

my swollen knee

Cuddles

The start of bruising

 

Thank you to everyone who reached out and prayed. And a HUGE thank you to Mimi and PopPop for keeping Maddy last night and getting her to and from school today. Bruce and Alex have been handling Alex’s medical needs and helping me change out ice packs. 

Please pray for the recovery to go well and for this to make a difference and for me to get back to living pain free!

Ali

Medical Update

This will be a pretty short update. I just wanted to quickly update on Maddy's results and next steps as well as my surgery.

Maddy had her long awaited Brain MRI on Tuesday. I was more nervous than I usually am for tests, but doing a test to rule out a brain tumor or another condition that would require brain surgery is not easy! Let me say how grateful I am to one of my close friends and prayer partners for allowing me to share my fears and turn it over to God. I am also so grateful to our new neurologist for getting results to me the next day! Fortunately, the brain MRI was read as normal! Praise God. They did find swollen lymph nodes in her neck that we thought might be responsible for her trouble with swallowing, but after consulting with several doctors they decided that that was highly unlikely. So we will move forward with more testing to determine what is causing the swallowing issues and hopefully a treatment plan.

On to me...I am finally having my knee surgery next Wednesday. I am so ready as my knee is really bothering almost around the clock now. I am only having "half" of the recommended surgery. Because of the kids needs and schedules, it is not feasible for me to be out of commission for 6 weeks. I am doing a less "invasive" surgery to clean up the cartilage. I should be able to drive and do most things in about 5 days. While the doctor is performing surgery he will also get a good look at if the other surgery is really necessary and if I need to figure out a way to make that happen in the future.

I can't leave you with just a medical update because that would be SO boring! I decided to introduce you to Maddy's equine therapists and best buds. While Victory has a herd of around 20 horses, Maddy rides two the majority of the time. They could not be more different, however they have both played an instrumental role in Maddy's amazing transformation over the past several months. Maddy started begging to ride horses when she was almost 5. I reached out to Victory and at that time it was determined that the best placement for her would be in the Hippotherapy Program (Physical Therapy using a horse). For her first year and a half she only did hippotherapy. But she desperately wanted to "ride". In October of 2020, she had her first therapeutic riding lesson with Tammi. Those first few months were HARD! Maddy wanted to ride so badly, but she was overcome with anxiety and fear and spent almost every lesson in tears at some point. I approached Tammi about doing a private lesson each week to try and build confidence. Tammi spent countless nights praying and lying awake trying to find a way to break through the fear and let Maddy enjoy riding like she so desperately wanted to. We started private lessons in January of 2021 and it took a LONG time for the tears to stop and we still heard "I'm nervous" all lesson long. Fast forward a year...In late Fall/Early Winter two horses arrived on Victory's property that would change everything. First came Blue. From the minute Blue arrived he stole Maddy's heart. Maddy BEGGED Tammi weekly for the chance to ride him. Blue is not the easiest horse as the staff and volunteers can attest to, but there is something about that horse and Maddy that is truly special. Maddy becomes someone different when she mounts Blue. She rides with a determination and assertiveness that we never see in any other circumstance. We are often left watching and shaking our heads. Many adults can't get that horse to move or obey and yet Maddy can ride him seamlessly. There is a love between them that makes Maddy believe anything is possible.

Not long after Blue arrived, Gabby arrived. Gabby could not be more different. She is calm, cool, collected. She is exceptionally well trained and Maddy showed her in January after only riding her a few weeks. Gabby has taught Maddy about a partnership, about trust. Maddy knows that if she does what Tammi has taught her to do, Gabby will perform. As Maddy has ridden Gabby for the past 4 months we have watched her improve weekly. But more importantly we have watched her confidence blossom. She is learning harder and harder skills. We no longer hear I am nervous. We are watching that confidence carry over to all areas of her life. Maddy is chatty and joyful at her lessons now. She is interacting more with her coaches, volunteers and classmates. WE are watching Gabby break down walls. 

These horses and this program is so much more than just a fun ride. It is truly therapy and it is changing Maddy's life. I am so grateful for the blessing of Tammi, Sarah, the staff, the volunteers and Kate and Leslie who so generously allow us to use Blue and Gabby. It is a bigger blessing than I could ever express. 

I would ask for prayers for my surgery and recovery and that I am able to take care of me and not over do it. And also prayers for Maddy as we continue to figure out her migraines and swallowing concerns.

Ali

Amazing Two Days!

 I realize I haven't updated in a few weeks. Life has been pretty much the same. Lots of school, horseback riding and forensics! However the last two days have been amazing!

Yesterday Maddy participated in the Victory Spring Spectacular. For the first time Maddy would be competing completely independently and she was in a walk trot class. She was extremely nervous as this was a big step up for her. I could not be more proud of the way she competed. Tammi(her coach) and I have the privilege of watching her improve on an almost daily basis, but to watch her put aside her nerves and ride beautifully was such a joy! She is relentless in her focus and determination and is an incredibly hard worker. I never care about her placement, I just want her to be proud of herself and have fun and be a good teammate. Yesterday she did everything that was asked of her and she was rewarded with a second place finish in both of her heats. Her combined score earned her the high point belt buckle for her class! Not to mention she was in a class with 4 teenagers! Maddy was so lucky to have Mimi, PopPop, Alex, Bruce and Mrs. Whitington there to cheer her on along with all of her buddies at the barn! I am so grateful for all the ways that Victory Therapy is shaping her. From the love of Tammi and the rest of the staff and the volunteers, to the dedication, to the hard work to the work of pushing through her fears, to the many prayers that are said, Victory is shaping her into an amazing little girl that I am so proud to call mine. 

Maddy with Kirsten our barn manager

High Point Champ!

Maddy and Ginny (one of her favorite volunteers)

Maddy and Tammi

Maddy and Emerson

Maddy and Sarah

Mimi with her babies

Maddy with Mrs. Whitington, her teacher

Awards for Maddy's class

Maddy and April, Gabby's owner

Celebrating after Equitation

Finishing Equitation

Equitation Lineup

A rare smile while competing

Mounting for her first heat

Maddy and Tori (one of her riding partners)

Maddy with Avary and Emerson (two teammates)

Today we switched gears and spent the day at another college tour for Alex. This one was special and oh so fun! For the past six years one of our favorite events to speak at for Cook Children's is Dance Marathon at TCU (Texas Christian University). Since the beginning Alex has thought this would be the school he would wan to attend. Today we took the first step and went on an "official" tour. It was completely different than our tour at UNT, because we have been on the TCU campus so many times and already feel connected. IT did not have the same excitement because it wasn't "new", but we both left feeling like it would be a great place for Alex. It has such a community feeling and they have amazing programs set up to get incoming freshman connected. It feels like Home. I'm not sure there is higher praise than that.

I would ask for your prayers for both of my babies. Maddy continues to struggle health wise. She has her long awaited MRI of her brain and spine tomorrow. Please pray for her health as well as her anxiety tomorrow. Please pray for Alex's continued good health and us as we navigate a new road that we didn't think would be possible. Alex is already taking over more of his health care which is hard for him both physically and emotionally. Pray that I am able to be strong and guide them so they may become who God created them to be. 

Ali